New Study Questions MS Drug ‘Value’

Early last week, I received an advanced copy of a press release from the American Academy of Neurology (AAN) regarding a study that you may have heard about. I had every intention to write a blog on the topic when the information was released last Wednesday. Then, life and MS got in the way.

Since the news has broken (and some will say that the news is broken after reading this) I’ll not offer it up as new, but rather I think I’d like to talk about what the study might mean for those of us living with multiple sclerosis.

The study, published in last week’s issue of Neurology was funded by the National MS Society, the National Institutes of Health, and the University of Rochester. It followed 844 people living with the relapsing form of MS for 10 years in order to estimate the progress of their disease. During that time, researchers were also able to look at the costs of multiple sclerosis — from hospital and office-based healthcare costs to diagnostic tests, nursing home stays, home health aides, lost time at work, and productivity.

In her summary, the study’s author, Katia Noyes, PhD, MPH, of the University of Rochester in New York, put it about as bluntly as I’ve heard it stated: “Our study shows that under the current prescribing and pricing conditions in the U.S., the disease-modifying drugs account for about 50 percent of a person’s overall healthcare-related costs over 10 years and need to be brought into line so that they are not such an economic drain.”

Collectively now: “DUH!”

Look further into how the study broke out the information gathered from research surveys and we see some rather disturbing information.

Dr. Noyes et al calculated the cost-effectiveness of all disease-modifying MS meds by measuring disease burden based on the number of years of life that would be added using a drug and the quality of life during those years. In other words, a person on one of the MS meds gained an average of about two “quality-adjusted” months over 10 years of use when compared to a person not taking that drug (or any other).

This number was based on the observation that a person taking that particular drug spent an average of 6 out of 10 years without any relapse of their MS, compared to 5 out of 10 years for the non-med user. Other drugs had different and varying results, but you get the idea… Some people had results as high as two-times better than their counterparts not on MS drugs.

While there are many “costs” associated with the researchers calculations, over 90 percent of the costs came from the medications themselves, loss of productivity, inpatient admissions, and in-home nonmedical care related to these meds.

The number that hit me squarely between the eyes was that, in the United States, the “cost-effectiveness” of all MS disease modifying drugs came out to an average of $800,000 per “quality-adjusted year.” That means that we are paying (whether we pay, our insurance pays, or Medicare pays) nearly $2,200 per quality day over 10 years versus those who don’t take MS meds.

I made sure to mention “in the United States” in that last paragraph as we pay an average of 67 percent more for our multiple sclerosis disease-modifying drugs than the rest of the industrialized world.

While reading the report, I asked myself whether the researchers took into consideration the way the meds’ side-effects can take away from our “quality adjustment.” If not, I think we can all agree that the numbers would look even worse!

One other factor was mentioned in the study that is very much worth baring here; these numbers show a much higher cost-effectiveness if MS drugs are started very early in the course of the disease rather than waiting until later stages of MS.

I’m still digesting what the results of Noyes’ study will mean for me and the way my medical team treats my multiple sclerosis. As many of you know, I’m at the end of my “coasting” period after a full course of Novantrone and am in the process of evaluating “what next” with my doctors. This study will surely be a part of my decision-making process.

We all know that MS meds work better for some than others, that some MS meds work for each of us while others may not, and we know that we really don’t know if a drug was working unless we stop and see our disease kick back into pre-therapy mode. This study, however, makes me believe that it’s time for the price of MS medications to come down — WAY DOWN — and I think that it’s time that we get some regulators involved.

Many MS meds have been on the market for nearly 20 years now. Those first drugs have well been paid for and their investors handsomely rewarded. It’s time that we start realizing that. While I’m not diminishing the importance of multiple sclerosis disease-modifying drugs, it is not good for Manyone that we are paying the equivalent of a working-class American’s monthly take-home pay for one “good day”!

This will not be the last time that you hear from me on this topic. I’ve already forwarded the study on to my contact at my congressman’s office and I’m not going to stop there! Are you with me?

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ABOUT THE AUTHOR

Trevis Gleason

Trevis L. Gleason is a food journalist and published author, an award-winning chef and culinary instructor who has taught at institutions such as Cornell University, New England Culinary Institute and...read more